whoomp! there it is

i recently had a friend text me and say, i’ve noticed when your having a hard time you withdraw...said friend is  also a therapist and at times will analyze and call me out. but i don’t mind, she’s always right, and she always helps.

truth is i have been in a funk.

i have been in limbo with my own health and lungs status. two full weeks where i was possibly going to be admitted. back and forth (educated) decisions resulting in 'well let’s try this’, ‘it could be this’....all of which have been correct and i am seeing improvements. (yay.)

however, during that waiting period it is hard to be hopeful. actually, it's easy to be hopeful, but i hold back feeling that hope. because if i brace myself, the sting isn’t as bad when they say i "need to come in for a clean out.” so, i kept all my bags packed. i lived out of suitcases for two weeks in my own home. i didn’t want to unpack just to turn around and repack the next day.

the CF community has seen many difficulties recently. on being a key Cyster (@claire.wineland @clairesplacefoundation) of our community passing in an unexpected way. a woman of much influence and dedication to speaking openly and positively about our disease. she is a beautiful, strong light and it stung when her light left to shine somewhere else.

i watched as multiple friends were being admitted. it almost felt like there was a plague.

my psyche and mental health were struggling. anxiety, frustration and depression.

i simply am frustrated it’s not an equal ratio of my efforts and results. quite frankly it doesn’t even feel like a 10:1 ratio; efforts:results. this can be overwhelming. it can be tiring, in fact i am tired. everyday. all the time. i still take 2-3 hour naps daily. what used to be an indicator that i had an infection brewing, now seems to be part of a new normal. i only have about 5 hours of functioning before my body is like, “no. no more. i need to recharge if you want me to go on.” it’s like i live two ‘mini days’ in every 15 hours i am awake.

anyway, i kinda took an unintenional break from everything. commitments fell through. i haven’t written since july. i’ve been inconsistent in my social media presence, as well as updating you. you, who are so invested in mine and my families health. i appreciate you dearly, and i am sorry.

sometimes i am envious of my friends who have lung transplants. they have a new light to them. a look of relief. a release from the demands of frequent hours of daily lung treatments. i know lung transplantation by all means is not easy, and is not a cure. it’s basically trading one disease for another. learning to manage something new and something as grand as foreign organs in your body is no easy task. but sometimes i just want to breathe. i want to be able

to laugh without going into a coughing fit. i want to be able to rough house with my kid at any moment; instead of responding to his plea, “let mommy do a treatment first, then i can wrestle”. only to then be able to participate a few short minutes before being depleted.

guys this is open, this is raw, this isn’t my usual postings or my usual mental view. i have been in a funk. but this has been my truth. i am human. we are all human. i have bad days. we all have bad days.

but during my bad days, i have had many hours to reflect and my conclusions are often the same. gratitude. sure, i might not be seeing a 10:1 ratio of my efforts to improve my lung status, or even maintain where they’re at, but i AM alive. i AM breathing, even though i am also coughing. i AM watching my son grow up, even if the view is often while sitting next to my treatment machine. i AM making memories with my husband. i am here. and frankly what more could i want? nothing. my greatest blessing, my greatest gift, all of my gratitude lies in the fact that God does here my prayers...i am still here on this earth, still breathing, and that is a luxury.

Xx,

    M

A BIT ABOUT MY BIRTH

When I was born how did they know I had CF?  My birth story is a little bit crazy & rather lengthy so in a condensed version....I was born with 'meconoum ileus'- I did not pass the black tar-like poop. In fact I did not have any type of bowel movement for over a week. As you can see in the photo, I was born with a swollen stomach and frail, tiny limbs. I also had the tube in my mouth to suck out all fluids from my stomach until I had a movement (they didn't want anything else getting backed up in my intestines). I had an IV in to keep me hydrated. I was moved to the ICU for a week & eventually had my movement. I refused to eat & a feeding tube was placed in my nose so I could get the necessary nutrients. I was then moved to a different level of critical care for another week. Every test in the book was being run but they all were coming back negative or normal. Everybody was baffled because they couldn't figure out what was wrong. The doctors had told my parents I wasn't going to live past the first few days, but I was still here so I must be a fighter! They had no idea who they were dealing with. ;) One day my Ma was holding me & kissed my cheek, "Oh, that tasted salty!" She said in passing & to no one in particular. One of the blessed, angel nurses with bionic ears, overheard my Mom & asked her to repeat what she had just said. The nurse went & grabbed my Dr. and told him they needed to run a "sweat test" on me. (One of the two tests that determine cystic fibrosis). They immediately began treating me as if I had CF. I started to improve & began to stabilize. At six weeks the "sweat test" was run, came back positive & I was officially diagnosed with cystic fibrosis.

How did I get CF? It's a genetic mutation...too bad it doesn't give me super powers like the x-men. One mutation must come from the Mother & the Father. Many people carry this gene mutation unknowingly. My parents did not know they were carriers until I was born. I will always pass the CF gene to my children & they will all be carriers of the CF gene. If Ric does NOT carry the CF gene, NONE of our kids will have the disease, but all of them will be carriers. If Ric IS a carrier of the CF gene, then there is a 75% chance our kids will have Cystic Fibrosis. Either way, we will be happy.  Yes, we all hope for & pray for healthy babies BUT if ours do have CF it's okay. I've had a beautiful, blessed life that has included CF. Living with CF has taught me SO many life lessons at an early age & some lessons that I simply may never have learned without this experience. God knows what he is doing, even if we don't quite understand it. 

XX, M

FROM WHERE I'VE COME

Three months ago: 

. consuming a liquid diet because the absence of appetite & being too ill to consume much

. elevated body temperature that it was determined to covered my body in ice packs

."you're scaring us," the phrase uttered from a nurse when I made a request about something I don't even remember. But, I do remember that reply, and probably always will. I appreciate her honesty.

. no real estate on my arms, due to the multitude of lines planted in them

. a catheter placement because of the loss of bladder control

. using a bed pan because of the shortage of strength to move

            -should be noted that the medications and liquids being pumped into my body didn't help these last two entries

. a successful day of physical therapy was sitting up in bed

. ingesting blue slushies --> turning my mouth/lips blue --> & startling more than one person that I may have a hazardous lack of oxygen 

             -this was by mistake, but was so funny to me it made me smile - a nice sensation compared to others consuming these days

. fatigue, yet inability to fall asleep...beeping alarms, opening and closing of doors, bathroom attacks, poking, proddings and tests

. pain

. a successful day of physical therapy was moving to the edge of my bed

. being in a state of wonder

. feeling tremendous love from family and friends

. having a constant companion (thank you Joni my MIL and Uncle John)

. a successful day of physical therapy was having the energy to have someone else wash my hair 

            -an immense amount of love and gratitude was felt as my mother-in-law cleansed and braided my hair

 . complete submission and will to others decisions for me

 . anxiety

 . fear and faith

 . gratitude

Today:

 . diet full of meat and potatoes

 . "you've come so far," from physical therapists

 . scar tissue protruding my veins

 . scaring on my arms and neck

 . bathroom composure

 . living in my (our) own apartment

 . being someone's constant companion

 .caring for myself (& a child)

 . walking

 . running

 . hiking

 . feeling tremendous love from family and friends

 . directing my own decisions

 . energy increasing weekly

 . happiness

 . gratitude

People ask, 'why do things like this have to happen to you?' People have stated, 'bad things always happen to good people.' I appreciate their concern and sincere sympathy. I know I have thought those same things when I hear of others going through hard times. But when I hear these phrases directed towards me, I think, "Why not me? I am no exception or less deserving of trials/illness/ailments then others." "Not everyone may agree that I am a 'good person'." "Something that may be considered 'bad' or 'hard', can also be looked at as, 'something to learn from'." As I've pondered these phrases, it reminds me of a scripture that has taught me repeatedly throughout my life, "I know that he loveth his children; nevertheless I do not know the meaning of all things." This, I can stand and say is true in my own life. I don't know "why" things happen to others or myself, but I do know that I have felt God's love to a great heighth. It might not be immediately during a hard time, it might be several months or years later that I have received clarity and a sense of understanding of "why" something may have happened. I believe these feelings have come because I have reached out to God searching for understanding. 

The virus that attacked my body in August/September is still in my system. It will be lingering through the month of March (six months). Yet, I have seen a rather rapid increase in my well being. I have thought, "Why am I the lucky one to rebound so quickly, when others suffer fatigue and pain the entire six months"? I don't know this yet. Maybe he is giving me a break. Maybe something else is around the corner. I am not where I used to be, on both ends of the spectrum. I am not as strong and filled with the stamina I once had, but I am not as weak and helpless as I so recently was. These things I am grateful for, because it has taught me humility as I have learned to rely further on others. It has taught me patience. It has taught me gratitude for my body and the incredible things it is able to endure and withstand. As well as it's abilities to heal, recover and continue on. I am in awe.

I am grateful for my body. I am grateful for those who selected jobs that require you to see others at their very worst, and still choose to show compassion and care for them. I am grateful for the support system around me - physically and online. I am grateful for parent's who taught me about a Heavenly Father. I am grateful for his loving Spirit that reminds me, I am never alone. I am grateful that this holiday season we all have the opportunity to reflect on the Christ Child and remember the peace he did bring, and has brought to so many. May we follow in his example and be one to bring peace in our families, communities, neighborhoods and in our own little corners of the internet. 

download this tree printable here

Xx, M

#LightTheWorld